Many international professional medical societies are addressing the value of clinical databases and wrestling with the problems of coding, validation, analysis and distribution of data. Congenital heart disease management has many features which make it very suitable for the development of an integrated database; it is highly specialised, carried out in limited well-defined environments and has relatively clear follow-up endpoints. However, it also has some important specific difficulties, the most important of which is the complexity and wide variability of existing coding systems.
In 1990, a group of like-minded friends, all cardiac surgeons, who now form the European Heart Surgeons Association(ECHSA) met to discuss clinical results. We were and remain of the view that data should be shared, open and honest. Co-operation was thought to be as important as competition in developing the future of the specialty. In this spirit, we decided to collect data on all the patients upon whom we operated; thus the European Congenital Heart Defects Database (ECHDD) was born, which today acts as ECHSA Congenital Database and collects the data from 189 hospitals from 50 countries, while 371 hospitals from 77 countries already registered in the the Database and have access to the results of over 235 000 cardiac procedures.